SurreyGuy: amitriptyline is my poison ...

[SurreyGuy]

Hello survivors,

 

It all started many years ago. Admittedly, I do not remember when. Perhaps 15 years ago. Yes, probably 15... I was younger back in those days and I had a problem: a nagging pain in the middle of my back, a pain which my doctor could not figure out. It appeared out of nowhere and was worse at night, when trying to lie down and sleep. At the time, my GP thought it was a great idea to put me on 10mg amitriptyline: it would help with the neuropathic pain and put me to sleep at the same time. I remember naively asking if there was a risk of addiction and was told: "It's not addictive. It's safe to take for many years. At this low dose, it doesn't work as an antidepressant." Well, my GP was right on that last point and, sadly, I believed him on the first point. I do not know how long I stayed on 10mg but I was not sleeping well and the pain was still there. Then about 7 years ago, my dose was increased to 25mg. Initially I felt better: I slept more soundly and I could forget the pain at night...

 

However, things gradually got worse, almost by stealth: I would have very bad nights every now and then, when, for absolutely no reason, I could not fall asleep. I would feel mildly depressed day in, day out, have little energy and interest in anything. I would avoid any social activities. Basically, my soul was being numbed by amitriptyline. I developed GI problems and severe abdominal cramps to the point where I could not even lie down on my bed without a pillow under my knee. The annoying thing is that for the best part of the past 7 years, I never connected those daily issues with amitriptyline. I just thought that's how life was... I thought I was unlucky...

 

Then, for a brief period last year (4 weeks), my GP increased my amitriptyline to 50mg and also put me on a couple of benzodiazepines, which were abruptly discontinued by the GP. I then developed very bad tinnitus and decided to cold-turkey amitriptyline; I was fed up with all those drugs I was being asked to take and had realised they were the source of my problems: I went down from 50mg to 37.5mg, then 10mg and 5mg, back to 10mg and eventually 20mg, over 10 days or so. I could not stop it, it was too fast, too painful. I stabilised on 20mg over a few months and, since June 2020, I have been slowly tapering. As I write this post, I am down to 13.7mg! 🙂 Withdrawing is tough, but I'm hopeful for a better future (I have had days in the past months where I have felt better than I have ever felt over the past 15 years and I truly cherish those few days!).

 

I wish I could speed things up and rid my body of this poisonous drug but I can't go fast. At my present tapering pace, I will probably need another 12 months... That's if things don't get more difficult towards the end, in which case I might need 15 months(?)... Anyway, keen to learn from others on how they successfully weaned themselves off amitriptyline.

 

Wish me luck.

 

Thanks.

 

SG

 

 

Edited December 6, 2020 by Gridley

[Gridley]

Welcome to SA, SurreyGuy.

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly.

 

Account Settings – Create or Edit a signature.

 

How fast are you tapering?  We recommend tapering by no more than 10% of your current dose every four weeks.  I'm afraid that it will take longer than 12-15 months to taper safely off 13.7mg, especially given the need to slow down as you get to the very low doses.   I know it's hard to wrap one's head around how long it takes to get off these drugs, but going too fast can actually take longer than a slow, safe taper if you have to hold or updose due to withdrawal symptoms.   It took me 4 years to taper off 20mg Lexapro.

 

Why taper by 10% of my dosage?

 

The following link is specifically about tapering Amitriptyline, including how to get the nonstandard doses needed for a 10% taper.

 

Tips for tapering off amitriptyline

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems. Get supplements that are single ingredient (not mixed with other types of supplements).

 

This is your Introduction topic, where you can complete your drug signature, ask questions and connect with other members.  We're glad you found your way here.

[SurreyGuy]

Hello @Gridley,

 

Thank you so much for your post. Yes, I realise that the 12 to 15 month timeline is unrealistic. My last taper, 2 weeks ago, was too fast and I am still suffering (though yesterday was better).

 

I reckon that 10% decrease every 4 weeks is even too fast for me. My nervous system is just too sensitive and I need to remain functional for work. Most of my tapers so far have been around 2% to 3% (but the duration between 2 consecutive tapers has varied widely)...

 

I had a consultation with my GP last week and found out that my first encounter with amitriptyline dates back to 2004 so I have been on this poison for 16 years ☹️,  initially at 10mg. I believe my dosage was increased to 25mg around 2013 or 2012 (I cannot remember when exactly and my GP can't even find that information in his records) before a failed CT in December 2019 and prompt reinstatement at 20mg. I started tapering slowly in late May 2020 as I felt better. Anyway, my goal is to come down to 12.5mg. I am probably 2 to 3 months away (depending on how long I hold at 13.7mg). Once at 12.5mg, I will work my way to 10mg, which is the smallest amitriptyline pill one can get.

 

Your tapering off Lexapro is inspiring. 👍

 

I will put together signature like yours.

 

SG 

 

[SurreyGuy]

Hello again @Gridley,

 

By the way, am I now allowed to post messages on other threads and connect with other users?

 

 

 

[Gridley]

2 hours ago, SurreyGuy said:

Anyway, my goal is to come down to 12.5mg. I am probably 2 to 3 months away (depending on how long I hold at 13.7mg).

Just a reminder of what I think you already know: go by what your body says rather than a schedule.

 

1 hour ago, SurreyGuy said:

 

By the way, am I now allowed to post messages on other threads and connect with other users?

 

Yes, for comments or suggestions or shared experiences or encouragement, it's fine to post on others' threads and connect with fellow members.  However, if it's about your own situation it best to post on your own thread so all the information about you is in one place.

 

 

 

 

[manymoretodays]

Hi SurreyGuy,

  

On 2/17/2021 at 8:33 AM, SurreyGuy said:

Amitriptyline liquid tapering using milk

 

Hello all

I know the latest tip from SurvivingAntidepressants is to use alcohol for liquid tapering of amitriptyline. However, having gone through benzodiazepine cold turkey 1 year ago, I'm loathed to drink any alcohol, even in small quantity so I have been investigating alternatives. I am curious to find out if any of you used milk for liquid tapering amitriptyline. I have heard that it is freely soluble in lipid/fat, hence my idea of using milk. Has it worked for you?

SG

 

I went ahead and added this stand alone topic in tapering and the response to the Tips for tapering amitryptyline topic.

 

And I do want to encourage you to update right here too.  On your topic.

Are you beginning to taper again, using a new form of home made liquid?  Or just planning ahead right now?

 

And no, I have not tapered amitriptyline in a milk solution, but you may get more input now, either here or in the topic.

 

How are you doing now?

 

And best, L, P, H, and G,

mmt

[SurreyGuy]

@manymoretodays, a quick update (for the community)...

 

I am presently tapering amitriptyline at a slow pace of 0.5mg every 3 weeks or so, down to 12.5mg. My waves are a lot more predictable and bearable than 6 months ago. They tend to be shorter too. Most of the withdrawal symptoms are gone after one week from tapering and the activating effects of Nortriptyline (one of the active metabolites of Amitriptyline) are usually gone after a couple of weeks. The third week is to enjoy life before tapering again... 

 

I really hope that the withdrawal symptoms do not worsen as I feel this is something that I can manage and I can see the light at the end of the tunnel...?

 

SG

[SurreyGuy]

Quick update: down to 12mg and stabilising nicely. Most symptoms are greatly reduced 2 weeks after conservative taper. It's going to take a while to get rid of that poison (amitriptyline) but I'm reasonably optimistic I will make it. Well... I hope.

 

SG

[SurreyGuy]

Right, I tried tapering 0.5mg twice, within 7 days, hoping that the second taper would cancel out the nortriptyline effect from the first taper and it did not go that way, which means the symptoms I am experiencing really are amitriptyline withdrawal symptoms. I will stick to 0.5mg every 3 weeks I think.

[SurreyGuy]

Tapered to 11.5mg last Friday. Last night, I woke up at 03:30am and could not really go back to sleep after. Tinnitus is raging. Other symptoms (anxiety, depression, sensorial symptoms, etc.) are not so bad at the moment. I am in a phase of my tapering where each day/night is different in terms of symptoms. The instability / uncertainty can be quite challenging. ☹️

[SurreyGuy]

Already a week has elapsed since I tapered from 12mg to 11.5mg and I have been doing ok so far with the exception of 3 fairly short nights. I know the second week usually is the most difficult one in terms of psychological symptoms with things improving in the third week. I am keeping active (walking, etc.) and making the most of the weather. If everything is ok, I will go down to 11mg early May... Slow and steady, like the turtle...

[SurreyGuy]

Well... last night was tough. Big bout of insomnia. Woke up after 5h and could not go back to sleep again. Feeling crap now with all sort of symptoms, mostly GI and a bit of anxiety... I really hate what those drugs do... the physiological dependence. Urgh...

[Mia1]

Hi SurreyGuy,

 I just read your thread, that’s fantastic you’re down to 11.5!! It sounds like you have a good attitude and perspective and that will help you tremendously. I myself just finished tapering this drug. For me, the more work I did on myself the easier it was to accept the w/d symptoms. My sleep is still disrupted but when I wake in the night I do not get up. I instead put the focus on relaxing and I focus on my breath. When my thoughts wander I continue to put the focus on my breath. I always fall back asleep, ALWAYS. Being in total acceptance of my symptoms helps me to rise above them so they don’t bother me. Be mindful of what your thoughts are telling you and try not to identify with the negative ones. Learn mindfulness as a skill to help stay in the present moment. These are some of the biggest ones that helped me.

Let me know how you’re doing, you will be done with this before you know it!!

[SurreyGuy]

Hi @Mia1, thanks for your post and encouragements. I still have a long way to go. My central nervous system is still sensitive from the simultaneous valium/zopiclone cold-turkey I suffered from 15 months ago so I cannot taper the amitriptyline as fast as I would like. Hopefully, in 12 or 18 months, I will be off this cr*p for good! Good luck with whatever drug it is you have left to tapper. 

[SurreyGuy]

Today, anxiety made a surprised (and dare I say, unwelcome) return towards the end of the afternoon. Maybe it's because I was reading some testimonials from an AD survivor... Anyway, I need to focus on my person, my symptoms, my life on a day-to-day basis. I should not try to project myself too far into the future. The plan is to taper again this Friday but I will see how I feel tomorrow and Thursday before another reduction...

[Ilias]

Hi SurreyGuy

Thanks a lot for the sharing. Must say that lot of people, including me do beleive that Amitriptilyne is quite of dangerous drug, almost a poison. I suffered, ans still suffer from multiple withdrawal symptom ever since a quite Cold Turkey following my neurologist recommondation. I was only on 15mg. Perhaps the word "only" isn't appropriate when we talk about amitriptilyne. There is no such thing called small dose.

I would like to know if your Tinnitus heald or at least get improved? Cause Tinnitus is one of the most painful withdrawal symptom that i still struggle with almost a year now.

MANY THANKS for your answer!

 

Amitriptilyne 15mg from february 5th 2020 to April 25 2020, then cold turkey.

Reinstate Amitriptilyne 10mg from March 11 2020 to march 30, then taper off 2mg every week.

0.00mg by the end of june 2020.

[SurreyGuy]

@Ilias, stopping any psychotropic medication cold turkey is very much like a game of Russian roulette... for some patients, it works, but for us, it doesn't. I'm not quite sure I fully understand the info in your signature but it seems your tapper after reinstating was very aggressive (2mg every week!). I'm presently tapering at a pace of 0.5mg every 3 weeks, which is less than 5% every 3 weeks, and even that is difficult... 

 

As for my tinnitus, it's 24/7. However, I have had a few days over the past 12 months (which I can count on the fingers of my hands) when it was noticeably fainter; I even had one day when I thought it was nearly gone. I am confident it will go in time, once my tapper is over. My problem is that the tapper will take years to complete. Years of suffering...

[Ilias]

@SurreyGuy it was the biggest mistake i have ever done. I trust an incompetent doctor who kept telling me take that dose and to taper that way. And yes after i reinstate i tapered too quickly cause i couldn't manage the symptoms i developed followingbthe reinstating like constipation/headaches/Tinnitus/urinary retention...i feel completly lost and i'm only 33 years old

[Altostrata]

On 4/24/2021 at 11:01 AM, SurreyGuy said:

Already a week has elapsed since I tapered from 12mg to 11.5mg and I have been doing ok so far with the exception of 3 fairly short nights. I know the second week usually is the most difficult one in terms of psychological symptoms with things improving in the third week. I am keeping active (walking, etc.) and making the most of the weather. If everything is ok, I will go down to 11mg early May... Slow and steady, like the turtle...

 

Hello, @SurreyGuy You have been doing a great job of observing and managing your withdrawal symptoms.

 

However, I think your tapering method might be catching up with you, even though you're making very small reductions at each step. If your withdrawal symptoms are increasing, I would give your nervous system a rest by not tapering for a while, maybe some months. The tinnitus, which is concerning, may lighten or resolve.

 

Many people find fish oil and magnesium supplements helpful, see

https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

You might try a little bit of one at a time to see how it affects you.

 

Please let us know how you're doing.

 

[SurreyGuy]

Thanks @Altostrata. I did not sleep at all last night so your statement is right. I am going to hold at 11.5mg for a while now... The fact that I am not progressing always depresses me a bit but I know from bitter experience that rushing things is counterproductive... Anyway, thanks for taking an interest in my case.

 

[SurreyGuy]

Went down to 11mg one week ago. So far so good. If anything, I feel better after the decrease. Wave will probably come in the second week... Will see.

[Mia1]

That’s great to hear, how are you feeling now?

[SurreyGuy]

Hello @Mia1, that's very kind of you to ask for an update. Actually, things are not great at my end. 😟 A couple of months ago, during a blood test I discovered I got a high PSA. I then did a mpMRI and this confirmed the presence of cancer in my prostate. I had a biopsy done under general anaesthesia (propofol) yesterday and I fear the propofol may have rekindled me as far benzo are concerned. That or maybe the anxiety caused by cancer is causing a massive wave of anxiety in relation to my amitriptyline taper. I don't know. Needless to say I'm staying at 11mg of amitriptyline for a while now... I can't imagine going down any further...

 

My spirits are crushed and I am so anxious about the future... This cancer thing is the last thing I need on my journey to a future free of psychoactive drugs.

 

I don't know what to do, whom to turn to for advice... I just hope the anxiety will subside. It seems to be worse in the evening before bed, for some strange reasons (I take amitriptyline before bed).

 

One weird thing though: the first week after reducing from 11.5mg to 11mg, I actually felt great. The second week was not so bad but it gradually started to build up and thing went bad on the third week, which was the week of my general anaesthesia biopsy.

 

 

 

 

 

 

[SurreyGuy]

@Mia1, I forgot to ask you how you're feeling. So sorry about that. I'm just not myself anymore at the moment...

[Mia1]

SurreyGuy,

You have no idea how sorry I am you are going through this. I am sending you serious healing vibes and loving energy. You WILL get through this. Yes, it sounds like your anxiety has been exaggerated by all of this stress. Anxiety is my biggest w/d symptom with this drug. 

I’m attaching a link to a healing body scan meditation I do nightly, it helps me and may do the same for you. I am here to support you in anyway I can. 

 

 

[SurreyGuy]

Thank you so much for your post @Mia1. You're an angel. I will have a look at the meditation video and I promise I will write a more elaborate answer. I, too, send you all the healing I can muster through these words  I type, hoping your anxiety will subside. 

SG

[SurreyGuy]

Hello @Mia1 , I did listen to the above video while walking today (walking seems to help when I am very anxious) and I must confess the voice of Michael Sealey is very soothing. Thank you for bringing it to my attention. On the topic of meditation video, I was watching this one, mostly in 2020: Meditation for Benzodiazepine and Psychiatric Drug Withdrawal - YouTube. You may find it useful, especially as you are still on klonopin?

 

My anxiety today is slightly less than yesterday. It was high when waking up this morning then subsided before lunch, went up again in the middle of the afternoon. I'm hoping it comes down again this evening before bed. The abdominal cramps are tough though (I can no longer stand or lie straight). I do not know if this is a short-term (i.e. 1 week long) wave or if it is a proper, long-term set back. Too early to say but my pessimistic outlook on things draws me to the latter conclusion. Deep down, I'm hoping it's just the stress of the hospital/general anaesthesia that caused my symptoms to flare up temporarily and that it's not the anaesthetic itself. I'm amazed at the speed at which you were able to decrease the amitriptyline. For me, it's snail pace I'm afraid as I react very badly to the slightest decrease. It could be my central nervous system is still very sensitive from the cold-turkey (valium+zopiclone) 17 months ago... who knows. It's hard to say for poly-drugged patient like us (I can see you had your fair share of psychiatric poisons too!).

 

Once I'm off amitriptyline, I will celebrate for sure. 

 

Anyway, how are you doing at your end? How is your anxiety today? Were you able to sleep soundly in the Big Apple? 

[Mia1]

Hi SurreyGuy,

Thanks so much for the meditation, I’m really looking forward to checking it out. I hadn’t even thought to look for one that was specifically for drug withdrawal, I’ll let you know what I think. Yes, klonopin is my next (and last) drug!!

 I’m certainly not an expert but you have been through A LOT and as we know even little things can set off our nervous system. I can get thrown into a wave having a stimulating conversation, seriously it’s that crazy. Keep a positive attitude and know that this will be behind you soon enough. Are the abdominal cramps a common w/d symptom for you?

Well I definitely did a super fast taper, I’m experiencing quite a lot of symptoms but I have also done a lot of spiritual work along the way and have learned to accept my symptoms and trust that no matter what happens I will be okay. Anxiety just doesn’t bother me like it used to. I avoided “uncomfortable” feelings most of my life so it’s nice to be able to sit with a feeling and know it’s just that, a feeling. And the funny thing is once I actually do this the feeling usually doesn’t last long. It’s the resistance to feelings that make them last and cause us discomfort. Do you find this to be true for you?

My sleep is crazy disrupted but I accept that too and have a little technique I use when I wake in the night, which is often. If you’re interested I’ll share with you. How is your sleep?

[WiggleIt]

Hello @SurreyGuy,

 

I’ve just now been reading your thread. I’m a survivor of tricyclic antidepressants that, like you, were prescribed to me for pain when, in fact, the doctor SHOULD have done back imaging for me to get hooked up with the correct physical therapy. 
 

I’m so sorry for all you’re going through, including the cancer diagnosis. One of my family members had prostate cancer, and he is now free and clear. I realize you are in a bit of a different situation, because you have the anti-depressants to contend with on top of cancer, but I have seen bodies do some amazing healing and recovery. I believe they can heal A LOT. 
 

Do you have a tapering plan while your cancer treatment protocol happens, or are you going to hold, or have you decided?

 

Rooting for you ❤️
-Wiggle 

[SurreyGuy]

Hello @WiggleIt, thank you so much for your kind words and your encouragement! They brought tears to my eyes. There is so much kindness on this forum. I cannot thank you and @Mia1 enough for your messages.

As for my taper plan, I think I will hold for a few months until I have received cancer treatment. I cannot fight two wars at the same time. I don't have it in me I think.

The consultant believe the cancer was caught early so it should be treatable. That said we are still waiting for biopsy results to understand how aggressive it is, etc. My last taper was 3 weeks ago but, in hindsight, I should have stayed put as I started experiencing strong WD symptoms on the third week, which was the week of the biopsy... also the general anaesthesia aftermath is really tough... I am off work for a few days. I am hoping I can make enough progress to go back to a more positive life.

[SurreyGuy]

@WiggleIt  , I just read your signature. Boy! You certainly had a difficult time. I am so pleased you are seeing great improvements after 7 years. Do you have any tips for recovery ?

[WiggleIt]

8 hours ago, SurreyGuy said:

@WiggleIt  , I just read your signature. Boy! You certainly had a difficult time. I am so pleased you are seeing great improvements after 7 years. Do you have any tips for recovery ?

 

I can tell you what worked for me in recovery and am happy to share!!! 
 

I was and continue to be incredibly lucky with my family support. My parents absolutely believed me about withdrawal, and so did my extended family, meaning I had someplace to go and live where people who loved me were willing to be caretakers while I was bedridden and moving through the various recovery stages on mobility/walking devices. I suppose that means my first recovery tip is one that is largely out of our individual control: Get family help from people who love and believe you if that is an option. But also, try to remain aware that there is such a thing as caretaker burnout, so don’t take it personally if you notice that your caretakers ever get a little short with you. After all, they are suffering, too. They are suffering to see you in pain, and they do suffer if they have to become your nurses; it’s intense work. But I knew my family loved me, and I would never have survived without their help. My whole family, including extended family, took care of me in shifts. So people who love you and believe you is a major recovery tip! If you don’t have people like that in person, then definitely lean on this forum, read it, and write here as much as you need to.

 

Eating healthy and hydrating is another recovery tip. Smoothies are a BIG help, are easy, and can be packed with healthy ingredients. Eating healthy does not have to be a daunting task, so don’t be afraid to pile a bunch of stuff in a blender and mash it up to get your healthy ingredients that way. 
 

Another recovery tip has to do with supplements. I tried supplementing with vitamins, but my body was so sensitive that I had adverse reactions to every single vitamin supplement that I tried. Sadly, that sensitivity seems to have remained. The last supplement that I tried was in 2018, and it did flare the dystonia; I’ve never tried any supplement again. I would advise to be slow and gentle if you try supplements. Because supplements are overall benign, I think that the tendency from some people in WD is to accidentally overdo it. That doesn’t mean supplements are bad or anything; it just means that, for us, less is more. Supplements might be successful for you, but when you try them, just try a tiny amount and see how it goes. I can promise that any reaction you get from a supplement will be temporary, even if it is scary. Also, you might not get a reaction at all, so supplements might be some thing that DO become part of your recovery. However it works out for you, I’d say use the “less is more” strategy with supplements. 
 

Another recovery strategy for me was resting a lot, but I realize I only had the luxury to do that because of my family caretakers. Had it not been for them, I don’t know what I would have done, especially since I was truly and severely bedridden for so long. Yet that recovery tip remains: rest (but be careful not to become a potato).
 

That brings me to another recovery strategy of exercise. If you can exercise, do it. If exercising flares you, then don’t go full-blown with it. Again, employ the less-is-more strategy. Go for a gentle walk. Heck, it doesn’t have to be a full blown walk around the neighborhood. You can lay around for an hour, then get up and walk around your house for five minutes. But do move your body. When I was no longer bedridden all of the time, I went to neuro physical therapy for dystonia. I did a lot of physical therapy for many, many years as part of my recovery. It was crucial!!! So find a way to move your body that works with your WD. 
 

This next tip is majorly important, and I definitely learned it here on SA: distract, distract, distract! WD is a beast that twists not only your body, but also your heart and mind. These pills, as we all know, don’t just affect you while you’re on them, but continue to affect you when you are off of them, and that is the struggle of withdrawal, getting back our hearts and minds. For me, getting back my heart and mind meant constantly distracting myself so that the fake, chemically created thoughts/feelings of WD didn’t beat me. I watched HOURS, DAYS, MONTHS, and YEARS of television, and I don’t feel one bit bad about that. Television gets a bad rap. Before streaming existed, TV used to be called the boob tube. Now, streaming is called binge watching, because people gorge themselves on the screen. And you know what? I don’t give a lick about the stigma of sitting around and attaching your face to a screen. I say whatever is a happy distraction, do it! I also was eventually able to read comic books (all I could handle, because WD made reading so hard) and I collected (still do) toys. I have a master’s degree, used to work in the arts and in academia, and used to be quite fit and athletic, but my major coping mechanism for WD was watching television. And there is no way on earth that I felt bad about it, and I still don’t feel bad about it. So just distract yourself! 
 

Okay, so here is the synopsis of all the verbosity above:

 

-Find support from people who believe you

-eat healthy

-hydrate

-maybe use supplements 

-rest
-gentle exercise

-distract, distract, distract 

I really hope that helps

 

 

 

Edited June 28, 2021 by WiggleIt
Edited for grammar

[SurreyGuy]

Update: anxiety/akathisia subsided on the night from Sunday to Monday but anxiety came back on Tuesday unfortunately, though not as bad as it was during the week-end. I'm hoping tomorrow will be like Monday, i.e. a bit more relaxed... One day at a time...

 

@WiggleIt, I think your advise are spot on. Here is what I'm doing:

 

 

-Find support from people who believe you - I rely on my wife and mother for most of it. Both believe me and are supporting me. I wish I could move back with my parents in the countryside. Unfortunately, international travel restrictions and the need to be there for my wife and son mean that I have to stay put. Also, I am the bread earner. 

-eat healthy - I believe my wife take care of this but I will take note of the smoothie advice. It's one way to eat more veg and healthy food.

-hydrate - I could probably do more in this area...

-maybe use supplements - I stopped taking multi-vitamin and I stopped taking K2.

-rest - I try too but sometimes, akathisia and anxiety are such (not too mention abdominal cramps) that I can't lie down.

-gentle exercise - I tend to walk every day, at least 5 miles.

-distract, distract, distract - work has helped when it's not too stressful

 

@Mia1, I would say my sleep is sporadic at best. I sometime get decent nights (i.e. 7h+ of sleep) but on most nights I wake up at least once. I struggle to fall back to sleep so any tip from you would be mostly appreciated.

 

 

 

[WiggleIt]

ANY lessening of the anxiety is good news! That means your body KNOWS how to be less anxious, and it can eventually get there completely.

I'll check back on you, promise <3  

[Mia1]

I’m so happy to hear your anxiety is subsiding, very good news. 

So my sleep has been disrupted for some time, I wake several times during the night. What I do is tell myself I’m just going to focus on relaxing and not worry about sleep. I truly never put the emphasis on sleep, always relaxing. I then shift my focus to my breath, I’ll listen to it if I can hear it or just focus how the breath feels going into and out of my body. Anytime my mind wanders I put the focus back on my breath until I fall asleep. It’s helpful because it pulls you out of your head and into the present moment and it’s very relaxing. I have ALWAYS fallen back asleep doing this. Sometimes it’s right away and sometimes it’s a couple hours later but if I can get one or two more hours of sleep I’ll take it. And I’m not up all night thinking 🤔 

So give it a try and let me know how it works for you.

[SurreyGuy]

@Mia1, thanks for the tip. I will certainly use it. As it happened, last night, I did not sleep well at all. In fact, I'm not sure I slept at all. This came as a blow as yesterday was probably my best day so far since my biopsy under general anaesthesia. I would like to believe I am going in the right direction, i.e. stabilising at 11mg, but the path is very tortuous... (and painful!).